Changing Faces: raising professional awareness of the psycho-social impact of disfigurement and how to ameliorate it

Why Changing Faces?

Changing Faces is a leading UK charity supporting and representing the interest of people with disfigurements from any cause – from birth, accident, violence, warfare, cancer, eye or skin conditions, or facial paralysis.

The charity was launched by its Chief Executive, James Partridge in 1992, twenty years after he was severely burned in a car fire at the age of 18. His aim with help from many clinicians and academics, was to build on and disseminate the lessons of that experience which he had described in Changing Faces: the Challenge of Facial Disfigurement published by Penguin in 1990 (now only available through Changing Faces).

Changing Faces as a pan-disfigurement charity, has gradually grown from its tiny beginnings to being nationally-known. Today it has an income of nearly £1.4m mainly from charitable sources, a staff team of 40 (30 full-time posts), and over 400 volunteers. It is strongly committed to localising its services and campaigns, bringing them closer to people who can benefit and who want their needs and voices heard.

Its first regional Centre opened in Yorkshire in 2013, and the Big Lottery Fund in Scotland has just awarded a major grant towards another Centre in Scotland. The charity works closely with many condition-specific support groups and aims to be underpinned by robust academic research.

This article outlines the breadth of Changing Faces’ work, our perspective on what health care for people with disfigurements should look like – and what we offer in the form of training and advice for health and social care professionals.

Changing Faces in brief

Changing Faces has two tightly-linked programmes: Changing Lives and Changing Minds, which together, we believe, tackle the challenge that people with disfigurements face: experiencing low self-esteem and confidence for living in a society which puts excessive emphasis on good looks and stigmatises people with facial disfigurements.

Changing Lives

 Changing Lives aims to support and empower individuals and families to live full and confident lives, achieving their ambitions, and fulfilling their potential – and to advocate for better psycho-social care. Our professionally-trained teams provide emotional support and practical advice including about skin camouflage creams to thousands of individuals and families each year at national and local level– and much self-help guidance can be downloaded from our website (http://www.changingfaces.org.uk).

We also support health professionals in their care of patients – and offer training too. And last but not least, we seek to influence how psycho-social services are delivered in the NHS arguing that they should be integral and routine in all patients’ pathways.

Changing Minds

Changing Minds is about promoting face equality (like race equality) so that everyone is treated fairly and equally for what they are and can contribute fully to society irrespective of their appearance. We therefore seek to challenge examples of public prejudice (such as in the names and characterisations of the villains in the children’s online game, Moshi Monsters) and ridicule (such as by Jeremy Clarkson in a recent Top Gear programme).

We are also proactively seeking to transform the expectations and confidence of employers towards people with disfigurements through a campaign called ‘What Success Looks Like’ (http://www.whatsuccesslookslike.org.uk). We are also active in promoting inclusive education for children with disfigurements by providing advice to teachers and schools and participating in anti-bullying campaigns.

What is the impact of a disfigurement?

You will notice the term ‘disfigurement’ has featured a lot in this article so far for two reasons: first, because we use it as a collective word referring to the aesthetic/visual effect that any trauma or medical condition or their treatment can have on the appearance of a face or body, making it look unusual, scarred or asymmetrical, or causing it not to function normally. And it is used in the UK’s Equality Act 2010 specifically protecting people with disfigurements from discrimination, a unique status worldwide.

Second, there is a key fact which links the experiences of people with all the different causes of unusual-looking faces and bodies, whether from a birthmark, a cleft lip and palate or a cranio-facial syndrome, scarring from traumas, a cancer and its treatment, an eye or skin condition, and facial paralysis. Although their medical conditions and treatments differ hugely, the psychological and social impact of them is very similar indeed.

Our clients and research over the last 20 years confirm the similarities. As a child, young person or adult with an unusual face or body whatever its cause, can be emotionally and socially very challenging – and for the family too. The problems that arise sometimes require psychiatric help such as post-traumatic stress syndrome (eg: nightmares) but most are distressing within a normal frame of reference and are often inter-related:

• Intra-personal: living with a face or body with scarring or asymmetry is a challenge to a person’s self-esteem and sense of identity. People experience grief at the loss of the looks they had prized or the hope of their child’s. They may see their future or their child’s without ‘good looks’ as permanently blighted. Feelings of sadness, guilt, shame, anger and depression are also common
• Inter-personal: everyday social encounters are complicated by a disfigurement (especially to the face): being stared at, avoided, asked curious questions, patronised, called names, excluded and viewed as ‘different’ (what we call the SCARED syndrome) – and worse, some are ridiculed or rejected. People can feel self-conscious, socially anxious, withdrawn and isolated, leading to depression and even suicide. Making friends and intimate relationships is complicated; getting work or promotion can be difficult
• Medical/surgical questions: people have many difficulties in understanding the options for medical or surgical treatments because the jargon can be very impenetrable. They lack support in making sound decisions. The effects of hospitalisation can also be serious. Functional problems which can inhibit or slow down return to work or school – and parents can find their whole lives taken over by anxiety

It is also very important that health professionals know that research consistently finds that the level of an individual’s distress due to one of these disfiguring conditions is not related to its scale or extent. What may be considered ‘minor’ blemishes (for example from a skin condition), especially if they appear on the face, can be very distressing.

What should be done to meets these needs?

Changing Faces aims to meet the needs of people and families who contact us but fundamentally, we want to see the NHS/health care routinely address, assess and meet them in patients’ pathways.

We have evolved a package of help which we call the FACES package which is tailored for each client by our ‘Changing Faces Practitioners’ (CFPs) in one-to-one and group sessions and available in self-help guides online. CFPs have a wide range of backgrounds such as from nursing, social work, counselling, play therapy etc.

Our experience and research confirms that individuals and families can cope successfully with a disfigurement if they can:

• Find out about their condition and gain realistic information about its treatment including about skin camouflage so that they are in control
• Gain a positive ‘Attitude’ about their future built on resilience and determination
• Cope with their feelings by discussing them with family, close friends or a Practitioner/professional
• Exchange and share their experiences with, and learn from, others in similar situations
• Strengthen their Social skills to manage other people’s reactions, make new friends and gain the vital positive feedback from social interactions

The good news is that CFPs are starting to emerge as valued and, we believe, cost-effective members of NHS clinical teams providing immediate help in clinics at Great Ormond Street Hospital and other hospitals being supervised by clinical psychologists or similar. We are looking to train and position new CFPs in the years to come.

But many health professionals can help patients with disfiguring conditions not just those trained with a specific care remit. Psycho-social rehabilitation requires a multi-disciplinary approach including surgeons, nurses, physiotherapists, occupational therapists, speech therapists, ward cleaners, social workers, dieticians, hospital school teachers – all have a significant and appropriate role to play.

We know of a growing number if ‘good practice examples’ – and in burn care, we have produced a comprehensive training package for all members of the team (see https://www.changingfaces.org.uk/Health-Care-Professionals/Training/Training-package-for-burn-care).

Adequate psycho-social care not only decreases the distress experienced by patients, it also lowers costs in the longer term and helps to reduce health inequalities.

What can you do?

You could consider doing a Changing Faces’ Study Day – two are being held this autumn. See https://www.changingfaces.org.uk/Health-Care-Professionals/Training/Study-days.

Or you might like to arrange for Changing Faces to do a more detailed piece of work with your team. Please contact Henrietta Spalding, Head of Advocacy on henrietta.spalding@changingfaces.org.uk

Our clients and research over the last 20 years confirm the similarities. As a child, young person or adult with an unusual face or body whatever its cause, can be emotionally and socially very challenging – and for the family too.